THE GRASSROOTS

e-Bulletin to Strengthen our Community

American Childhood Cancer Organization 

March 2011

E-Bulletin

IN THIS ISSUE
Targeted ALL Therapies
State Cancer Plans
Creating Hope Act
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Greetings!


Welcome to ACCO's e-Bulletin-"The Grassroots."  The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause.  As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed. 

 

This first edition of our e-Bulletin is in keeping with that mandate and also in keeping with the high quality writing of our previously mailed newsletters.  I want to extend my personal thanks to former board member Patty Feist for her informative summary of current available treatments for acute lymphocytic leukemia and to Nancy Goodman for her work on behalf of all of us through her legislative initiative´┐Ż-"The Creating Hope Act."

 

I encourage each of you to read the current status of our nation's State Cancer Plans and unite in an effort to bring awareness to our legislators of the need to include childhood cancer as a unique focus in those plans. Our future is our children and this includes our children with cancer.

 

Please contact me if you have articles that you would find helpful, or columns that you would like to see included in upcoming editions. I welcome your feedback. Welcome to "The Grassroots!"

 

Ruth I Hoffman MPH, Executive Director


Targeted Therapies for Childhood ALL

by Patty Feist MS

 

"...My son was diagnosed in 1997. I read his treatment plan and cringed: How could we pour all these toxic chemicals into his body for over 3 years? It was surreal watching the nurse administer the medication, then carefully disposing the syringes into toxic waste containers. A PhD student in a research lab working with an analog of one of his medications accidentally got some of it on herself, and she thought she was in immediate medical compromise. But we were putting this drug in our son's veins!

 

It was my belief at that time-1997-that within a decade, the treatments for childhood ALL would advance to much less toxic therapies. Not so. Thirteen years later very little has changed in the treatment plans for ALL. In the standard of care treatment plans, the same toxic drugs are used as in the 1990s...."

Read More...

Is Childhood Cancer Included in Your State Cancer Plan?

by Ruth Hoffman, MPH

"...In spite of the fact that childhood cancer remains the leading cause of death by disease for our nation's children under the age of 15 years, twenty-three states have NO mention of childhood cancer in their state's cancer plans. Children are solely mentioned in context of education and awareness programs aimed at healthy children. These include education programs, such as smoking prevention and cessation, and healthy lifestyle choices, such as exercise and healthy eating. The focus is placed on reducing the cancer burden in adults..."

Read More... 

The Creating Hope Act of 2011

Providing Incentives to Pharmaceutical Companies for the Development of Drugs for Rare Pediatric Diseases.

 

"...The Creating Hope Act generates market incentives for drug development through the establishment of a priority review voucher for pediatric rare diseases, including pediatric cancers. Under this program, a company or institution that develops a drug for a pediatric rare disease and receives FDA approval for that drug also receives a voucher..."

 

Read More...